• Doenica Palacio

Cure CMD Newsletter May 2018

Updated: May 22


Celebrating

10 years

of

commitment

to a cure



Join Us in Celebrating 10 Years of Commitment to a Cure!


That's right, Cure CMD is 10 years old! Thanks to a vibrant and engaged community

that has quadrupled in the last four years, we are ready for advances in CMD research

and treatments, and continue to grow our engaged community.


We have You, our CMD Community, to thank for our successes these past 10 years,

which include:

  • Co-fund over $2 million in research grants

  • Launch two clinical trials

  • Publish care guides to improve the lives of those living with CMD

  • Grow the international CMD community to over 2,500 registry participants and over 4,000 on social media


Cure CMD was established in 2008 with a mission to advance research for treatments

and a cure for Congenital Muscular Dystrophy (CMD). Cure CMD works to improve the

lives of those living with CMD through engagement and support of our community,

and collaborates with dedicated patient, parent, research and government advocates

worldwide to achieve our mission.

Research News:

Taking Steps Toward Treatments and a Cure



Cure CMD Funds Four New Research Projects


We are thrilled to announce our 2018 grant awards for Collagen VI,

LAMA2, and SEPN1.


A joint grant award with Muscular Dystrophy UK for LMNA-CMD will be announced in the coming weeks.


Collagen VI LAMA2 SEPN1

MDA Funds Next Leg of CMD CRISPR Research



Dr. Dwi Kemaldewi and the Cohn lab receive $180,00 to continue research in LAMA2 gene correction therapy techniques. This project, first funded by Cure CMD in 2015 continues to see successful results.


Find out more



Successful Completion of First CMD Clinical Trial


Santhera announces the successful completion of the CMD first clinical trial: CALLISTO. This phase 1 trial, sponsored by Santhera Pharmaceuticals, the National Institutes of Health, and Cure CMD, examined the safety and tolerance of omigapil in affected individuals with COL6 and LAMA-CMD.


Cure CMD and Santhera will co-host a community webinar in the coming weeks to talk about results from the phase 1 trial and what's next.


Read press release with FAQ

Cure CMD Hosts Online Publication Library


Cure CMD has launched its online Publication Library with abstracts and full text (if available) of scientific publications focused on CMD research. We hope sharing this library will help bring the community closer to the work scientists are doing to improve lives and find treatments. Library entries are updated weekly, so check back often for new

publications!


Check out the CMD Publication Library

CMD Care: Become Your Own Best Advocate



Cure CMD Launches New CMD Care Guide Project


While affected individuals and their families await breakthrough treatments for CMD, the optimization of care is critical to ensuring a health quality of life. Cure CMD believes optimal care is critical in preserving function, reducing illness and hospitalization, and extending life.

Watch for new and updated care guide publications in the coming months that cover CMD Child/Family Care, CMD Adult Care, CMD Pulmonary Care, Cardiac Care and Hypoglycemia protocols.


CMD Care Guides

An Invaluable Resource: CMD YouTube Channel


Did you know that Cure CMD hosts over 1,000 hours of videos and educational webinars aimed to help you and your family learn more about CMD Research and Care? With subtype specific playlists, as well as playlists about important care issues such as breathing and stretching, we encourage you to check out this invaluable resource. So many questions answered!


Cure CMD YouTube Channel

Community News: You Are Not Alone!



CMD Podcast Launch: Two Rare Mama Bears



Two Rare Mama Bears, a Cure CMD Podcast - where we discuss all things Congenital Muscular Dystrophy and Rare Disease... All subtypes, ages, abilities and topics!


While participating in Rare Disease Week on Capitol Hill, the idea of a podcast was born with the intent to connect the CMD community. This podcast is about bringing together affected

individuals, their family, researchers, clinicians, industry, and policy-makers to have conversations with the goal of moving the needle on the mission of Cure CMD.


Check out the Two Rare Mama Bears Webpage

Like/Follow on Facebook Twitter Instagram

Subscribe to the podcast on iTunes, Google Play and Stitcher!

Use another Podcast App? RSS Feed

CMD Celebrates Volunteer Week


Cure CMD wouldn't be where we are today, 10 years after incorporating, without our dedicated volunteers. We celebrated Volunteer Week in April, highlighting some of our longest serving volunteers. Check out our volunteer highlights for:


Charlene York Robin Swallow

Diane Smith-Hoban Susan Lee-Miller

CMD Represented at 2018 Rare Disease Week



Megan Meyer, Matty Manley, and Jessie Parks, three CMD Moms took a week away from their families to represent Cure CMD and congenital muscular dystrophy at Rare Disease Week on Capitol Hill. Activities culminating with internationally celebrated Rare Disease Day, February 28, 2018, our moms were able to meet with congress representatives, share their stories, and learn from other rare disease advocates how to share their voice. #shareyourrare

#curecmd


Interested in representing the CMD Community in 2019? Travel funding may be available! Get in touch: info@curecmd.org


Megan's Story Matty's Story

Megan: Live from Capitol Hill

Matty: Live from Capitol Hill

CMD Facebook Community Surpasses 10K Reach


While Facebook may not be for everyone, it has become an incredible platform for bringing our international community together to make distance irrelevant. Find others like you - with

over 15 private CMD support groups, you will find your tribe.


Cure CMD Facebook Page

Cure CMD Support Groups

2018 U.S. Tax Law: What We Know For Sure



Cure CMD's Director of Development, Tracy Yassini, shares some information about changes coming to this year's U.S. Tax Laws and how they might affect you.


Read More


Events & Fundraisers: Get Involved


Cure CMD Celebrates 10 Year Anniversary with 10 for 10 Campaign


Help us celebrate 10 years of building up an organization which has funded over $2M in research focused on finding treatments for CMD!


Be a part of the Cure by asking local businesses or your workplace to become a Cure CMD Champion and request a Heart Pack of 20 Cure CMD cards that can be sold for $5 or $10 each. Request your CMD Heart Pack!


Want to donate to our 10 for 10 Campaign directly?

Text to Give: Text the word "Donate" to 424-383-6739

Donate on the Cure CMD Website

Donate on Facebook

Team Cure CMD at the Los Angeles Marathon



Cure CMD's first ever participation at the 2018 Los Angeles Marathon in March brought 27 team members from across the United States and over $21k in donations for CMD research. Many thanks, Sabine de Chastonay, for starting a new tradition for Cure CMD!


Read More

Check out some photos from the marathon!

Join the team for 2019


May 20: Parents Raise Money for Rare Disease Research in UPENN Million Dollar Bike Ride



Since 2011, Team Cure CMD has written thousands of miles on

bikes to raise money for CMD Research. This year, the team rides to

raise funds for Collagen VI Research, and have already raised over

$30k - to be matched dollar for dollar by UPENN!


Find Out More About the Ride & How You Can Support the Team


Listen to Ep1 of the Two Rare Mama Bears Podcast with Susan Lee-

Miller talking about the Million Dollar Bike Ride

July 7: Pacific Northwest Get Together



Hosted by the Manley family, you are invited to join CMD affected individuals and their families for an afternoon of fun!


When: July 7, 2018 4pm-9pm


Where:

Mirabeau Park

3500 Mirabeau Pkwy

Spokane Valley, WA 99216


Want more information? Want to RSVP?

Please get in touch: mathea.manley@curecmd.org

July 14 : The Dystroglycanopathies: 2018 Patient and Family Conference


The annual Dystroglycanopathy Family Conference will be July 14 in Coralville, IA. Featuring talks from physicians and researchers, Q&A, laboratory tours, networking, and social gathering.


For more information, please contact:

Carrie Stephan

Phone: (319) 356-2673

Email: carrie-stephan@uiowa.edu


Learn More

We'd love to hear from you about news, events and

fundraisers going on in your corner of the world.


Get in touch!


Visit the Cure CMD Website!

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Cure CMD is U.S. registered 501(c)(3) non-profit organization. Donations are tax deductible to the
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